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I am worried about The Autism Community | invisible i [CC]

I am worried about The Autism Community | invisible i [CC]


Oh my god I’ve got the worst pins and needles in my leg. Oh my god I don’t even want to move That was my hip I’m falling apart oh my god Help me Hey everyone it’s Katy and welcome back to my channel. So for today’s video, I thought I just wanted like a chilled sit-down chatty video and there’s been something that I’ve been wanting to talk about but I just didn’t know the best way to do this and I really don’t want this video to become a rant so I’m trying to avoid that but there are some things that I’ve been seeing in the wider autism community that have been really like affecting me emotionally. Some things are making me angry some things some things are making me upset and I honestly when I see these things it makes me not want to be a part of this community. It makes me want to take a step back or come offline and you know, no one seems to be talking about this and I’m not sure if it’s just me who feels like this but I wanted to open up the floor to a conversation to see how everybody feels and to share my feelings. The first thing that I’m seeing a lot of at the moment which really doesn’t sit right with me is people speaking on behalf of the autistic community. Yes, most of those are autistic themselves but I just feel like as a community regardless of how connected we are with being on the spectrum and having lots in common we are also very different human beings and I don’t feel it’s right for anybody to speak on behalf of every autistic person regardless of whether they’re autistic or not and they have experience firsthand or not I just think it’s wrong because most of the time when I see people speaking on behalf of the entire community, it’s things I don’t agree with and then I’m like please don’t speak on behalf of me because what you’re saying, I don’t agree with and you’re making out as if everybody who is autistic wants this, likes this, or agrees with what you’re saying and that’s not gonna be the case because there are a load of autistic people out there and we all share different opinions and different ways of approaching things. Just because we’re autistic it doesn’t mean that we all approach things and all think about things in the same way. The side of things that I’m seeing this more often in is to do with language. So like someone will tweet something being like oh I met a person with autism today, I don’t know, and then someone responds saying Oh on behalf of all of the autistic community we’d prefer you to say autistic person and yes, I know that that is an opinion that a lot of people on the spectrum share but I personally have no preference and I don’t like people speaking on my behalf especially when what they’re saying is not necessarily what lines up with my views. Some people have a preference in language absolutely, but others like myself don’t and that’s not a bad thing, you know people having a preference of language is absolutely fine. People not having a preference is also absolutely fine and I feel like sometimes the fact that I don’t have a preference with my language and you guys know I just say anything that comes out of my out of my mouth really, I’m just like blebleble, you know, I don’t filter my own language I don’t police the terms that I use in terms of autism language, you know, I say aspie, I say Asperger’s, I say autism, I say autistic person, I say person with autism, I say on the spectrum, I say so many different terms because I don’t police the language but I feel like sometimes that’s not a good thing to be like in this community like everyone seems to have like a very rigid preference and I feel like I’m the only one out here who doesn’t care and then when I see people speaking on my behalf saying hey, we prefer you to use this term as opposed to this term, I’m like… This is a side of things that I often don’t talk about in the community because I’m scared that I’m gonna get judged for not having a preference in language because I feel like it’s such a big thing to have in this community at the moment and to not have that you’re kind of seen as you know, well, why isn’t this important to you? It should be important to you and I’m like, I’m sorry I can’t change the way my brain works if something isn’t important to me I can’t just flip a switch and then it suddenly become important to me language has never been something that is important to me I’d much rather promote open honest conversations that don’t involve policing language and that people can openly express how they feel without feeling like they’re saying the wrong thing or not saying it correctly I’d much rather promote those types of conversations than promoting conversations that you have to say everything right first time, you have to say these terms. If I’m in a conversation where I see someone say something that isn’t quite right or that I feel might be offensive to some people it may not necessarily offend me, but if I feel like it’s teetering on the edge of oh this might get a little bit controversial I will politely correct them I will say I totally get what you mean really good point, you know, thank you for contributing to the conversation just a heads up this term or this way of wording things can sometimes be a little bit offensive to people or some people may not like this so just in future, maybe it’s something you want to think about why not try saying this instead and that’s how I tend to deal with it but I carry on the conversation you know, I don’t shut that conversation down. This is another thing that kind of frustrates me in the community at the moment is when someone does say something incorrectly the conversation is immediately shut down. So if let’s say a person who is outside of this community who wants to know a little bit more who’s a bit curious asks a question, but they say person with autism as opposed to autistic person just as an example some people will go and just be like you shouldn’t say that on behalf of this community you should say autistic person and they don’t then respond to the question or don’t like invite a continuing conversation it’s just immediately shut down and I feel like the person who wanted to get involved and wanted to know things is left with this kind of negative like taste in their mouth in terms of like what the community is all about and I feel like we’re actually preventing people from knowing more about this community by focusing so much on the way that they word things and the way that they approach certain topics. Half of the time probably more than that. I see questions, curiosities, statements, that are coming from a place of lack of understanding but are not malicious. It’s just a lack of understanding and people will come at that in a malicious way and it almost feels like we’ve got our guard up all of the time and it’s just sort of like this community is very, you know, don’t say something to me unless it’s right and I don’t like seeing it it really it really hurts me because I feel like these people are trying to get involved in our community trying to understand us a little bit more and it just feels like certain people in the community are just shutting that down. Now, don’t get me wrong I do know that not everybody in our community is like this. I feel like there are loads of people out there who are very willing to answer questions and open up conversations regardless of language and they’ll talk from their own experience as opposed to talking on behalf of everybody. I do worry about the long-term consequences of this because the more the conversations are shut down and the more that we are refusing to involve people who maybe don’t know as much about the autism community from getting involved because they didn’t do it correctly or with the right language or in the right way I feel like we’re further segregating ourselves and if you ask a lot of people who are on the spectrum again I can’t speak for everybody but I know a lot of people who are in this community whose main goal in terms of advocacy and awareness is actually inclusion we want to bridge that gap between people who are not on the spectrum and people who are on the spectrum and I feel like that is not happening at the moment because of the way that certain members of the community are shutting things down and refusing to talk because it wasn’t you know seen as correct in their eyes or their opinions and their views have got in the way of actually having a very open and honest discussion to educate. I know from firsthand experience and conversations that I’ve had with people that there are businesses out in the world today who want to become autism friendly, who want to open up their services to autistic people, but are worried that if they do that it’s not going to be seen as good enough in our community and they are going to get backlash from it because whatever they do is not going to appeal to everybody and therefore they’re going to have people coming up to them being like well, this isn’t autism inclusive. This isn’t autism friendly. This is not helpful when actually, they’ve tried their best and that really upsets me because people are opening their doors to us wanting to learn more about our community not only as a personal thing but in terms of their business as well, and they’re worried about the way that we’re gonna be- gonna react to that and that just breaks my heart. People are scared of our community and they’re scared to open their doors up to us personally and business-wise because they are worried about the reaction that we’re gonna have and that worries me, that upsets me, that frustrates me. I just want to give every one of those people a hug and say please don’t be scared of us but I can totally see why they are because in many respects I’m in this community and it also scares me. So there we have it I hope this video didn’t turn into a rant because I really didn’t want that. So, I’m sorry if it did I just wanted to have a conversation because I do feel like this conversation has not been had before and I really wanted to open up the floor to a conversation and just see how everyone’s feeling, check in with everybody and make sure they’re okay because I do feel like the more and more that this happens the more and more we’re isolating each other within the community and we’re not becoming a cohesive community and that worries me and that upsets me and I never want this space to reflect what’s going on in the wider community. I still want invisible i to be a place where you guys can come and chat regardless of how you feel, if you agree with me, you disagree with me, if you agree or disagree with someone in the comments like I feel like we can respect that on this space and that is what this space is for. I do feel like some people hop on this channel and they feel like I’m talking on behalf of all autistic people and I’m really not you know and if people are in the comments section agreeing with me, disagreeing with me, agreeing partly with me but not all of it, it further proves the fact that we cannot speak on behalf of everybody. I cannot, you cannot, this community cannot nobody you can speak on behalf of all of us because we’re so different and I want to embrace that I want to show that I want to you know put that on a pedestal and say look how different we all are but also how connected and how similar we all are at the same time. Isn’t that f*cking amazing, you know, like I love that about our community that we’re all so connected. But yet all so different at the same time and… that just blows my mind. Deep thoughts over let me know what you think about this in the comment section. Please have a conversation with me. Let me know all your thoughts about this. Do you agree? Do you disagree? What have you been seeing in the community? Is there anything that makes you upset, scared, worried, about what you’re seeing and how can we fix this? What do you think would be a great way of solving this if we can? Obviously, I know that we can’t control everybody and opinions are opinions and thoughts are thoughts but is there a way that we can step up and maybe help each other out in this situation if we’re feeling a little bit like this community is not going in the direction that we are hoping that it was going to go in and that we’re feeling a little bit isolated within our own community. Let me know in the comment section. Be sure to give this video a big thumbs up if you enjoyed it I hope you had a really really good day, and I will see you soon. Bye guys! You

Comments (100)

  1. Yes, that's so true. I have stopped my subscriptions because of their rigidity in stuff like this that really does not matter. Everyone should have the freedom to be who they are whether we please the whole autistic community or not.

  2. What is important for me with the language, is for what I want communicated to be communicated. And in the heat of the moment when I feel a need to tell someone I have autism/Aspergers, I need a single word that gets it across to them that their expectations for me to be a certain way or do a certain thing, is expecting something they wont be getting from me.
    Last time I told someone I have autism, they took it as a joke and even laughed… Not what I want to deal with in the moment. If only there was a word to communicate, without telling them my life's story of sensory issues, and my blindness to non-verbal communication.

  3. I am a little worried that the "inclusive" wording is actually causing backlash from wider society. I didn't think I would ever say this but I think it has caused this "I speak as a person with autism". I support individuals with autism and learning disabilities co morbidly, I worry that these individuals are highly under represented and yet spoken for by others who have a very different set of daily challenges.

  4. It is heartbreaking to realize where this rigidity might end up. What rigidity and being critical of others do is to build walls instead of building bridges.
    For instance, there are some channels where insulting NTs is common because of mistakes made in knowing how to ask questions to autistics. I am not just talking about the person with the channel but also the horrible comments posted.
    Some of them have this long list of what NOT to say to an autistic person. I guess it just depends how it is presented. If it's presented in an compassionate way instead of in a critical way, then it is ok and it will build a bridge instead of a wall.

  5. Thank you for speaking up. Although I like to describe myself as autistic instead of person with autism because it feels more like the experience I am having, I don't really see the point all that policing language stuff. I think it draws away from having a meaningful conversation because you only focus on the wording.

  6. One day I was talking to a friend, she suddenly interrupted after I said Aspergers and insisted I don't say it. I questioned why, and she said it referred to a nazi now… That derailed the conversation. I dont like when people do that. They know what I was talking about, why cant they just leave it alone and not have to nit-pick every word.

  7. I have AS but also involved in AS projects online and soon after starting to use twitter someone who didn't follow me replied to a post I made to correct me when I said 'person with autism'. Since then, I always type 'autistic person', although would rather not feel I have to be so careful, and have in fact seen others criticised for saying it that way round too. I think supporting people is more important than semantics. I guess political correctness is everywhere though.

  8. I really agree with what you have said, thank you for speaking up I’m Autistic also, and couldn’t of explained it any better. Your a real lovely person

  9. Social media is exhausting. More and more I find it’s just not helpful anymore and the negative frequent judgments is just one of many reasons why. Social media is not an inclusive place. It’s a place where a few louder voices dominate and the rest of us are expected to fall in line. (Not just in the autistic community but in other communities too). I’m finding more peace by concentrating on my life without media lately. I’ve deleted Facebook & Instagram. Twitter may be next. But I still watch a few positive YouTube channels like yours.

  10. On behalf of the entire community. (jk) Thank you for 12:01 🙂

  11. Well said. Far from a rant.

  12. Good video! The point about businesses scared to become autism friendly because they're scared of backlash is interesting. Sometimes I feel like some businesses use "autism hour" as a promotional stunt – especially those which have these hours at 9am on a Tuesday. How do I stay on the correct side of the line here? Do I accept a business is trying or should I ask them to try something else? Is it even possible for some businesses to do more?

  13. I think the language we use should be somewhat of an individualized thing. Also, it’s more of how a person says something than what they are saying. I am simultaneously kind of a language junkie though and I also think that reinventing language is vital for human evolution, as language dictates our world and how we interact with it. The problem is we all need to be discussing our viewpoints and respecting preferences, even if we don’t agree with them. ( although if a person’s preference is rooted in hate I cannot tolerate or respect that.. that’s a different story) We need to be respectful and open up a dialogue… that’s the first step. Language changing is also sometimes more important on a systemic level. I personally like saying autistic person because it reinvents and transcends systemic oppression and the shame and taboo that people have in regards to the word autistic itself. It has actually been empowering for me to say autistic rather than “having autism” but I still do say both, depending on my mood and who I am speaking with.

  14. Also to add further, I joined an autism fb group recently and I realized that aside from similarities with being on the spectrum and a few others having synesthesia (which I do too), I really don’t fit in with people in general lol. I guess my views are too “radical”? I don’t know.. but I experienced a lot of transphobia, racism, and misogyny etc. I within the community and a lot of religious dogma that made me feel trapped and unheard. I also identify as gender queer so this was all very difficult and upsetting for me.. I think I had a meltdown over it (can’t remember) but to me logically if we are advocating rights of marginalized groups such as those on the spectrum, wouldn’t that same mindset translate over to other marginalized groups? I have a very activistic mind and this shocked me, but I also can be very socially naive at times in terms of my assumptions about how people will be compassionate and able to have discussions. My mind naturally connects dots from one social issue to the next, but within the community it felt very stagnant and almost suffocating for me.

  15. If you have met one person with Autism, you have met one person with Autism. I like your views and agree with them.

  16. Really appreciate your courage & honesty Katy in opening up a space for discussion, along with sharing your thoughts and feelings on this.

  17. I absolutely agree with you. Tbh I think this kind of thing happens in a lot of “minority” communities, there will always be SJWs who go to the extreme and only further alienate the group sadly.

  18. I think it is SJWs with ASD who do that, it's not the ASD, its the SJW part of them that does this…

  19. I don’t have a preference in language either. It doesn’t matter as long as they’re not being mean or whatever.

  20. What's the difference between asking person with autism and austic person? X

  21. I definitely agree. There's a lot of difficulties that I see in the community as well. I wish that people could all listen first before attacking and try to bring everyone to a place of further understanding.

  22. Twitter is a hyper reality where most people do not express sympathy or empathy. It brings out the worse in everyone. It's best to not use it. It messes with everyone's perception of reality.

  23. I feel like this is a problem in society in general at the moment, people are so hung up on how things should be said 'correctly' and get so offended about the small details instead of seeing the big picture and I really thinks it hinders 'outsiders' in learning about a community they're not part of, like how are they supposed to learn when they are too afraid to ask questions because they're being shut out and yelled at the minute they say one slightly wrong thing? In my opinion the terminology you use isn't important as long as you have good intentions and you're open to being corrected when you do make a mistake.
    Thank you for making this video. I've been thinking about this topic for a while and you spoke my mind, I never know how to start a conversation about this, so I'm so glad you made this video.

  24. I prefer person with autism… but I don’t really care at all. I’m tired of getting lectured by people on this and I especially hate when people automatically assume I’m not autistic because I comment on something saying “person with autism” then someone will comment “autistic people prefer person first language”. It’s like IM AUTISTIC!!!! Just because I write person with autism does not mean I’m not!!!!!

  25. Extraordinarily good video, and well articulated.

  26. I strongly advocate identity-first language (autistic person) over person-first language (person with autism) because of certain problematic implications of saying "person with autism", yet I know not every autistic person agrees with this. Autistic people have a right to call themselves what they want. However, for those who are ignorant about the autistic community, I think we need to invite them into the conversation and educate them about the issues in the autistic community rather than shut them down. Thank you for this video!

  27. I strongly agree with the points presented in this video. When we're busy trying to censor terms which aren't really derogatory to begin with, we need to look at bigger problems. I think the fact that we're getting all pissy about these terms is a bigger problem than the words themselves. The world will never be a great big Kumbaya where everything is politically correct and we all get along perfectly, we just have to accept that.

  28. Being on the spectrum and working in the medical field I prefer person with Autism as I am a person 1st and Autism is one trait of me and it's not all I am. I don't mind calling myself an Aspie but I don't prefer others who are NT or not close with me to call be a fellow Aspie. I feel I want to be viewed as a person and then my different abilities that all have to contribute to society. I am open and interested others views. I wonder if it's different in different parts of the world as we are all uniquely made.

  29. I think I’ll make up my own terms like “I’m ASDly” or “I’m an asder” or “I live autistically” then no one can get mad at me for how I express my relationship to my ASD 🙂

  30. 👍🏼🙌🏼👌🏼

  31. You're not the only one. I have no preference. For those who do, understand that others who don't know your preference and say something you don't agree with. Be an adult and agree to disagree. Educate, not hate.

  32. I agree, Katy. It's sad that it's divisive within the community, but like you said, it also basically alienates neuro-typicals who want to understand and learn about autism.

    The policing usually comes across as condescending and intimidating. If we want people to be understanding of us, we need to be kind and welcoming in how we explain and educate.

    One other thing about this issue is that even a person's native language can make a difference on how someone might refer to people. Obviously in English we often describe the subject before stating it, while in other languages, they state the subject, then describe it. So even that can make a difference in how people approach this.

    Thanks for speaking about it. I hope it becomes a topic that more people can respect others feelings and opinions on.

  33. I totally agree! I've noticed this a lot as well. And it runs me the wrong way. I hate that people are so quickly to attack others, especially when they're curious and want to find ways to understand or help. Then they're shut down and almost become avoidant of it Autistic pause of it

  34. Uuuuuuuuuuffff TOTALLY AGREE!!! I FEEL THE SAME WAY!!!!!

  35. Thanks for bringing it out. I think the bluntness scares us neurotypicals, but we should just get over it.

  36. I don't have a language preference either, other than aspie sounds pretty lame haha :p

  37. I completely agree with your points, this is also how I feel about feminism on top of autism. Matter of fact, this is how I feel about a lot of things. Mental illness in general, chronic fatigue, many, many things… All of this policing on language is creating war, distance, and fear. Let is stop, PLEASE I beg…

  38. Love this video. Thank you! I too don’t find the language important for myself. I love the variety and difference we have. I am so excited to join the community. Again love this.

  39. Well why would people be scared of you and I do agree, we all are different the same way. And what is autism?

  40. The pain at the beginning was obviously eben for a autistic Person 🤣

    I feel you 😘

  41. In France we're happy when someone doesn't say a person "suffering from autism"…

  42. social media is where 1 percent of a group gets to look like EVERYONE. Twitter is awful like that. I’m a very paranoid person so I am very wary of politically correct speech rules because I might say something wrong that is misinterpreted, but there are others who go all in on that stuff. I’m from America so maybe I’m politically skewed, but political correctness just seems to cause backlash and reaction. Obviously, the things people have said to me are painful, but accomplishing real, concrete achievements mean more than anything. More autistic people having good jobs in safe environments, access to services, and less autistic suicides are goals that matter more than anything else. Political correctness has just gotten so weird these days, I don’t like it. I love civility and understanding. I think that the paranoia people feel when talking about sensitive topics makes them less able to feel compassion as their “flight or fight” survival instinct is always on. Political correctness is fine when it’s normal, but it hasn’t been normal or sensible or moderate for years now. It just alienates most people and empowers the reactionaries.

  43. I don't like the whole idea of tone policing marginalised groups. We shouldn't HAVE to be calm and polite all the time, because sometimes even if people dont mean it, what they say is hurtful, and we're allowed to be upset by it, even when educating people. I don't agree with the idea that we, as a community, are responsible for alienating our potential allies by being a little rude or irritable. I see this a lot in discussions in the LGBT community too, the idea that by not being endlessly polite and patient with people, we're stopping them from wanting to learn. If you want to be an ally to a group of people, one or two people within that group being a little rude to you should NOT stop you from wanting to be an ally and learning. You should want to be an ally because you believe people are equal and its the right thing to do, and thats NOT a belief that can be retracted based on if a few individuals are rude to you.

  44. Katie, I'm aspie myself. 100% agree. Never be afraid to speak your mind free speech for all! It's their choice to be offended or not. Right behind you 🙂

  45. Yes I agree, i’m not particular with the terminology used, unfortunately I think this a common issue with many communities and one of many reasons it’s so difficult for everyone to understand one another. I deal with this by being open and honest and respect that people have different opinions, which you are doing on your channel.

  46. I agree and disagree. Like, yeah, make an statement so general is not alright and I really don't like people saying that we all think the same. But about companies…I really think this is going to happen with every community. Reception can be difficult to manage and you cannot control every reaction, but you can talk to your target, make questionnaires, pilot products…you know. In general, getting involve in a discourse is not easy. I personally accept most businesses that are friendly with autistics if they don't support ABA and their supporters but I understand that people don't like certain companies because, I don't know, their specific products for autistics are extremelly high or something like that (and yes, it happens). I actually prefer buying from companies from autistics for autistics because I feel like you can get details done to your preference, like, I feel they understand certain necesities that we share and neurotypicals might ignore because they are not well known.

  47. They covered the whole person first language thing in atypical when the father doesn’t use it and the group wants him to. Personally I use either and it’s not a big deal to me

  48. I disagree with you austic people here are not like that , also it's hard for some of them to work in certain conditions so maybe they should complain to the businesses in a polite manner , also that just low that there scared of us because I used to be scared of neruotpyicals

  49. I agree, people should only speak for themselves not everyone as personally for myself I say aspergers and don't refer to myself as autistic or having autism as my brother has more low functioning autism so for me by calling myself aspergers and him autistic it helps separate them however I have no problem with other people using those words on themselves as thats them, we should all be able to call ourselves what we want, everyone who is on the spectrum is different so of course people will refer to themselves differently and see things differently like I don't see the difference with autistic person or person with autism but if someone did not like say person with autism I wouldn't use it for them.

  50. Best way I heard someone describe it is you say you're gay, you don't say you're a person with gay 😅 It makes it sound like a disease you can catch. How is that ok?!

  51. I agree that noone should speak on the behalf of the entire community. But language is something that bothers me.
    "Autistic person" suggest a genetic disposition the is a subset of the population.
    "A person with Autism" suggests that something abnormal happened in the person's development. The person is damaged.
    I guess it is the literal thinking. Fuzzy interpretation of words get me into arguments whenever I try to have any conversation beyond idle chit chat.

  52. Well done for being brave and sharing this with us. Yes, we need to respect each other. You've made a great points on all of this. Thanks heaps…

  53. I hear you. Walking in egg shells in auty groups. I like to use the comparison
    “I have blue eyes” / “my eyes are blue”
    “I have autism” / “I am autistic”

  54. I think I understand what you mean and why you are saying this stuff. But language with harmful roots, there's a big preference from a lot of autistic folk. It doesn't have to be important to you, but people don't want to have some language used for them.

    I agree there's somewhat a purity culture, and.politely correcting people making subtle mistakes is a good idea.

  55. Like there's a majority preference with person with autism vs autistic person and it comes from have.g autism parents speaking on our behalf and being listened to. And us not being listened to

  56. I really like your point of view on this. When I was training we were taught you have to put the person before the diagnosis eg – child with a disability as opposed to disabled child. So out of habit I would always used person with autism and I don't mean to upset or offend anyone with this. Personally I would rather be referred to as a person with bipolar rather than a bipolar person but honestly I don't mind either.

  57. Really good video, so glad you are airing this. Just wanted to say I wholeheartedly agree with the sentiments expressed here, and this is something that has been irritating me too. Yes, we're all individuals and we are all entitled to our own opinion, and the right to express our experiences without fear of ridicule or disparagement.

  58. I completely agree. This didn't sound like a rant at all and you're absolutely right the more isolated the autism community becomes, the more difficult it will be for people to understand and the more prevalent stereotypes will become. I hope that with all the new research that has been made recently, the autism community will be able to use it to raise more awareness and help people to understand us, rather than turning people away.

  59. Thank you for bringing this up! Ideological purity is really tough to handle, and even though it can be quite exhausting to constantly have to educate, it’s important to remember people are usually acting in good faith. It’s like how here in the US, Asperger’s is leaving the diagnostic vocabulary, and I have seen people saying to others on the spectrum “you can’t have aspergers because it doesn’t exist anymore,” which isn’t just unhelpful, but also rude and egocentric. As always, you are such a positive voice and a light in this community <3

  60. It's really funny you mention the thing about language because i said autistic person to my mum and she said i should say person with autism whilst i understand the difference as someone with aspergers i found it funny that i don't mind the way it was said

  61. I completely agree with, especially when it comes to the language side of things as I don’t have a preference, but who’s to say what is “right” and what is wrong? I’ve asked a few questions on social media as I’m finding out more about myself heading into diagnosis and sometimes I don’t get a response. I don’t know whether this is because the question has been asked before or whether it’s the way I word things. I started my YouTube channel because I saw your videos. I feel strongly about autism and want to advocate but for myself rather than on behalf of everyone, to educate those curious and like you said to be able to bridge that gap. Knowledge is key. X

  62. We all know we are unique in our way, autistic or non-autistic. That's the same with opinions, we all have our own personal unique way of thinking and acting in the world. It doesn't matter whether i agree or disagree, i take in the knowledge all of you youtubers give us and take the things that fits me as a person. To be honest there is no way to please everyone. If we all would go your way Katie there are ppl on the other side who disagree and would held the same conversation ( just the other way around ) as you did. All i can say is keep your eyes on your own channel and do what YOU think is right for your channel and your community. There isn't a wrong or a right way to do it.

  63. I don’t mind what terms/words people use. It’s the intention that matters.

  64. Hi Katy! I have Autism, Tourette’s and anxiety. Your videos help me cope with my conditions! ❤️

  65. I appreciate your video and I agree!     I feel that part of my autism is not conforming, sometimes not being able to and I'm proud of that. Society has all of these labels or "terms" because they conform. So, why should I, being apart of the autism community, do the same by having all of these preferences?     The only preference I have is asking someone or appreciating if they ask me how I prefer to be addressed as? Do they want me to say autism or autistic? As you said, we pride ourselves on being such individuals in this community and then we shut each other down with arguments about PC terms.     I truly like to hope our community is united around loving each other as different not less, each person as a special individual. Not divided by petty differences of opinion.     Thank you <3

  66. We need to make room for sincere ignorance so that we can include, educate and show solidarity.

  67. If so much effort was put into educating everyone on autism and how to make the world better for everyone, we would achieve so much more. This extreme angry approach was vary common in the Vegan community about 15 to 20 years ago and vegans were labelled extreme and in some cases terrorists as a result. I would hate to be labelled and receive a negative backlash just for being autistic. We need to do more to encourage higher employment and equal opportunities for autistic people, not make it seem like we are a liability.

  68. Thanks for talking about this. Just came from a (sort of) video response to this from IndieAndy. Honestly I was scared to begin interacting the autism community because I was scared I would say the wrong thing or didn't know the terms. I try to keep in mind people's feelings about that when making videos, but I try to do my videos to help people know more from the perspective of every day people, which is where i came from since i wasn't diagnosed until 23. While i think it's okay to express if something bothers you/us, but I personally dont care all that much, either. I did a guest video and tried to express how it can feel when people say you dont seem or look autistic, but I think I didn't do a very good job because I think some people thought I was always really offended or took it super personally, while honestly, I totally understand where people are coming from.

  69. I've been very late diagnosed as Autistic almost 2 years ago now at the age of 57, no one had a clue back when I was a kid in the 60s. I've only realised there is a community for a few months now so so I'm a bit clueless as to what's going on but since being diagnosed I'm happy for anyone and everyone to know I'm Autistic and I have no preference as to labels anyone can call me what they like. also, I'm happy to talk about it to anyone as it's my favorite subject at the moment. For the first time in my life, I'm getting to understand why I find somethings incredibly difficult and other things extremely easy.

  70. Thank you! Exactly how I feel. I do get annoyed when others on the spectrum get so hung up over terminology instead of allowing others not in the community to better understand us. In every community there is a toxic minority sadly which I feel ruins it for the whole. I know I'll probably get bashed for saying this but it feels like nowadays in general there is a lot of people who are oversensitive and you have to walk on eggshells for fear of saying the wrong thing no matter the context

  71. If we look at language literally, saying "with Autism" is no different than saying "with depression" or "with anger." To be "With" something also says a person can not be with that thing, whatever they happen to be With.

    And we autistic people know… Being autistic is most definitely permanent.

    It's quite literally part of how our brains, neurological wiring and how our brains process information are different in a very physiological way from NT people.

  72. You are not alone. I'm on the spectrum and I agree totally with you. I'm very active in the community in my country and I'm having trouble with how to deal with it. Many NT approach us with cleary lack of knowledge overall and prejudices and we need to be open to every conversation. Educate with kindness.

  73. On the bit about criticism, I don't always know how to phrase things politely. Other times, I don't know what kind of question to follow up with, which causes the conversation to shut down, despite how open I want to be with the other person. Since it's hard for me to take in the viewpoints of others, it's hard for me to keep the conversation going when I don't understand their perspective.

  74. Me Agree With All Of This (Me Autistic).

  75. I think this is a problem when something goes from being an organized group of people with something in common, to being "The ___ Community". Because when you make it a community, things start to be about the community as a whole as opposed to being about the people within that community. That's a very… Nuanced?… Way of describing things, but it seems to apply. Additionally, words are something that people seem to be overly concerned about in a lot of situations. It seems to me that the concept of offensive words has switched a bit. Originally, something would be labeled as offensive if the intention behind it was to offend. Now, things are labeled as offensive if they could cause someone to become offended. That means that something that was well-intentioned but accidentally offends someone is considered vile and offensive rather than just misguided. Societally, I think this leads to people being less open in their answers and more fearful in their questions, which is really negative and dangerous. Personally, I would rather someone ask me something using outdated or offensive terminology than someone hold on to incorrect assumptions.

  76. Yeh why is it such a big deal in language terms, we should accept language regardless as for example I'm already self conscious with what I say. I have no prefernce either and I have asperger's. We should be inclusive of anyone trying to speak out.

  77. I feel like the Autism Community is being ignored completely and I would like to see more people from the LGBT Community and feminists to talk about and talk to people with Autism about their Issues. Right Wingers and Religious Fundamentalists want to control and oppress people with Autism on how people with Autism should live our lives and I really hate that and they want to ban vaccinations as they believe that vaccines cause Autism which has been proven in studies it doesn't to prove that Anti-Vaxxers are completely stupid.

  78. Gotta say I've been thinking A LOT about this recently. I'm 48 and was only diagnosed (with EUPD and co-morbid depression) last November so I'm still finding my legs as it were. It confuses me quite how some think they can talk for all, as one of the first things you learn is it's a range…a "spectrum" (even that's a little over simplified but convenient) of disorders. We have different combinations of this multitude of conditions and so no one person on the spectrum might not even have ANY of the same conditions as another but are still diagnosed as on the spectrum. "Autism" is not a single thing, we all know this, it is a combination of conditions grouped together that varies from person to person. We are generally different from the average person on the street and, combined with the communication difficulties that many experience, this brings a division as we are treated differently. That leads to separation and isolation. There's also the possibility of a lack of identity through "invalidation" (an example would be if you spend most of your childhood being told you are wrong or naughty or a weirdo, you should behave this way etc). In this case a person will attempt to find a group to belong to, an identity that they can acquire which leads to division, an "us & them" mentality (certainly can be a BIG factor with BPD (borderline) and EUPD (Emotionally Unstable Personality Disorder).

    We're people with hearts and souls and dreams (possibly quite weird ones but why care?). Have a look at some of the greatest discoveries in history. Many made by those on the spectrum (always loved rainbows :)) such as Isaac Newton (thought to have been) as well as many others. We have our contribution right there as innovation through thinking outside the box (I find there usually ISN'T a box that I can see ;)). Somehow we need to be (sorry to use the phrase) building bridges, a lot of people still don't know how we are all different (I didn't until I had a very confused and upsetting conversation with someone in my family who's an aspie). Because we are often not understood we are the unknown and thus feared. We are not damaged or broken or needing to be fixed (although there are some which such severe difficulties I can completely understand their wish to rid themselves of it). This is who we are. Once you get familiar with the strangeness…we're (mostly) really quite lovely ;). It's nice to know others love who we are. It's been a long lonely 48 years, but now I'm starting to feel as if I'm coming home (sorry, it's the only way I can describe it).

    In relation to own opinions (these are all MY own opinions obviously :)) most, that I've seen on YouTube tend to state that these are their own opinions or have some form of disclaimer.

    Love + Chocolate are the answers 😉 – (Sorry for the long post, I come from a family of teachers ;))

  79. the internet is a frigging mess. powerless idiots spend all day trying to feel powerful by power tripping online. Speech policing is a real thing…my 32 bans on Facebook speak to this fact lol

  80. Crass language like "autist" I'm fine with depending on the context. However I find "sperg" deragatory regardless.

  81. I love that the intros are very to the point. Especially without a long obnoxious song/animation

  82. I'm autistic and I don't have a language preference either. It's probably more common than it feels. And I dislike being spoken for as well.

  83. Totally agree! I only speak about myself. I don't care about language. Anything I post about is about my life not about everyone. Glad to see someone like me. I use all the terms too.

  84. Totally agree, too much emphasis on word usage from what your saying, I didn't even know there was much of a community to be honest, Kind of keep myself to myself but help autistic children's parents that I know in meltdown prevention ect. I always thought that offense over word usage was more of a neurotypical behaviour in a way that's always confused me because they get cliquey and create different ways to offend that are so unclear it's almost impossible to learn. It needs to be stopped straight asap, the goal is to help society understand and welcome not alienate us more, with you 100%

  85. I am only midway through this video and I 100% agree with you.

  86. I love what you’re saying. Especially about these terms and speaking for a whole community. I see that phenomenon in Germany, too. And i, personally don’t care about terms. It’s also about some symbols.
    It’s sad that businesses are scared of the community. They try to open up. If things aren’t correct or helpful for people on the spectrum, it’s about each of us to honor their efforts and then make gentle suggestions.
    And it’s the same about words.

  87. Trying to explain how ABA therapy is useful in contexts that don't involve autism to the autism community has gotten me attacked online so much. I think a big reason is because Autism Speaks supports it -for the 'treatment of autistic behaviors'. To be clear, I am completely against using ABA to 'treat autism' because I support the neurodiversity movement and autism acceptance. I would never recommend using ABA to discourage stimming or echolalia because these are things that we need to be able to do to manage anxiety.

    At its roots, however, ABA is literally just offering replacement behaviors that are more effective and/or socially acceptable to help people in their daily lives. These are used all the time for people without autism (e.g. kids with behavioral challenges who need more constructive ways to get what they want). For example, a neurotypical or allistic child asking for help instead of screaming/yelling/crying. They still get the help they need, but they aren't using challenging behaviors to get their needs met, since these will not be effective when the child is an adult.

    ABA is also used with nonverbal autistics who struggle with functional communication (e.g. asking for things to meet their needs). Giving the person a picture to point to in order to get what they are wanting to communicate across is technically ABA therapy. Some autistic people need to check their verbal privilege – not everyone on the spectrum can talk and communicate as pragmatically as those of us without language deficits. Are we seriously saying not to do this for an individual who relies on vocalizations that others don't understand? I really get my back up when people in the autistic community just put a blanket statement on ABA that 'ABA therapy is always damaging and wrong'. Can it be? Absolutely, but it can also be helpful used appropriately.

  88. Totally agree with you. The person with autism vs autistic person is such a debate, so how can you sah everyone agrees? Some people think person first language is more correct… I don't have a preference personally atm. But I'm also self-diagnosed…

  89. Being too prescriptive is rarely a good thing, even if it's coming from a good place

  90. Before you say “I speak on behalf of the autism community (or any community),” just ask yourself, would I say “on behalf of all white people” or anything stupid like that. Haha

  91. You're not alone. I don't like people policing what I can or can't say or how I'm referred to. I also hate the sides of the community who say autism isn't a disability or the people in the community who think in all or nothing terms were autism is an absolute curse. maybe it's just me, but I don't like this black and white thinking that the community has gotten involved in.

  92. I agree so much. Not just in the autism community either.

  93. Being very literal, I can see why people would not like "having autism". Like having the flu or a broken arm or a toothache. "Having" something insinuates it will go away, with time and treatment.
    But, when people are trying to understand, anything, they are going to ask questions, they may or may not know the terminology, help them understand, please, do not shut them out.
    I work with someone whose child, an adopted relative, that is autistic. Anytime they hear autism or someone may be/is autistic, they wave their hand & say "BS, Autism is today's ADHD, doctors are just handing out autistic diagnoses like candy". Their kid is autistic & they have ADHD. They don't believe anyone can be either, unless they act just like their kid or them. Oh, and, their spouse is the director of special needs children in a public school.

  94. me too and some people that are are neurotypicals sit there until just because they have an autistic daughter's think that all us autistic people have no compassion for anybody else. And that's wrong they don't even know what they're talkin about

  95. I don’t really care about language. to me it doesn’t matter how people refer to me (autistic person or person with autism) because either way I’m still autistic that fact doesn’t change either way you put it

  96. I agree .. it's the same with the LGBTIQ+ community sometimes

  97. I'm aspie. I agree with you. I have issues with social cues. I dont want to police everyone's language cause it creates more invisible social rules that I hate.

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